Life With a Primary Immunodeficiency

CVID basically means that my body doesn’t produce antibodies on its own and that when I get sick, I get spectacularly sick. I have never had a cold that hasn’t morphed into bronchitis or sinusitis. Or, if my lungs are feeling really lazy, a pneumonia.

I’ve spent the five years since my diagnosis trying to come up with a metaphor that accurately describes what having CVID feels like, and it has given me a lot of trouble for two reasons. The first is that CVID doesn’t really feel like anything; it is an invisible illness in every sense of the word. I don’t display any physical signs of having a primary immunodeficiency, and aside from bacterial and viral infections wreaking havoc on my daily life, there aren’t really a ton of physical symptoms for my body to display.

The second reason that I’ve had so much trouble attempting to describe how CVID feels to my friends and family is that my disease is cyclical. Not because of the waxing and waning of symptoms, nor because of the presence and treatment of infections, but because of the treatment to supplement my immune system.

Once a month, I receive an infusion of blood plasma to supplement my immune system. It gives me a boost of the antibodies that my body cannot produce on its own, helps my body to fight infections, and also gives me a horrible reaction.

My body doesn’t handle blood plasma well, so despite the slow infusion rate and pre-medication, I still end up with full body aches and chills, a fever, a migraine, nausea, and a rash. These symptoms typically last for up to a week following my infusion, and are fully gone by the two week mark.

Spending half of the month reacting to the medicine that is supposed to keep me from getting a cold and dying isn’t exactly my idea of a fun time. Because infusions have become such a divisive part of my life, impacting my productivity, mood, social life, ability to go to school, and pretty much every other aspect of my life, I’ve divided my months into two categories: Before Plasma and After Plasma.

I know that it’s counterintuitive to dread receiving my medication, but before plasma (that two week long sweet spot where the side effects of an infusion have worn off, and I have half of a month to kill before my next), I feel like a healthy person. It’s my two weeks of bliss. I can go to a concert, see a movie in theaters, or visit my friend when they’re home sick with the stomach flu without worrying that I will somehow contract an infection.

The slight undercurrent of fear is always there – fear that I will be sneezed on, fear that a have a viral infection I can’t detect, fear that somehow someway I will come into contact with germs and spend weeks in the hospital.

But I can live with that fear. That fear keeps me from sharing a drink with my friends, and makes sure I always have hand sanitizer with me, but it isn’t life altering by any means.

After Plasma is an entirely different story.

The side effects of my infusions leave me in bed, sipping water and vomiting up whatever medicine I take to help with the aches, chills, fever, and migraine, trying and often failing to fall asleep. I cannot go to school. I cannot get out of bed if I have a fever or a migraine. I cannot watch movies, or talk to my friends, or keep track of time enough to take my medicine when I should. I can barely read a book. It is a stretch to walk around the block with my mother, or hold a reasonable conversation.

After the first few days, my symptoms subside enough for me to resume most of my daily activities. I can work on assignments for my online courses, Skype my friends, and keep my medicine and food in my body. I am not fully functional, but I am functioning.

So what does a primary immune deficiency feel like?

It feels isolating. It feels like I am never stable. I feel as though I cannot trust my own health.

It feels as limiting as any disease, and as frustrating as any invisible illness.

The actual physical symptoms I experience with CVID are constantly changing, and depend entirely on when my last infusion was, and what type of infection I have at any given time.

But a primary immune deficiency feels scary. Every time I hear someone cough, I can’t help but panic – what if I get sick, too? I almost skipped my high school graduation ceremony because a classmate had mono, and I was terrified I would get it.

My disease has many downsides, but it can feel wonderful, too. I feel a sense of pride and am deliriously happy if I go a month without an infection. Each day I wake up without horrible symptoms, I feel excited and thankful.

It can feel isolating, but the chronic illness community is so accepting and inclusive, it’s difficult to feel alone. I’ve met many of my closest friends through our shared health problems.

Basically, CVID feels like absolutely nothing, and like everything, at the same time.